Take Care of Your Bladder!

“What to know – what to do.”

February 25, 2013

We are taught to take of our teeth, skin, heart, weight and so on every day. But our bladder, too?

Yep. We don’t generally think about the bladder until something goes wrong with it, like when it starts to leak or we feel that something is not working correctly “down there.” Then we have to figure out how to fix the problem.

To start, everyone—whether they have MS or not—should know about urinary tract infections and steps to take to prevent them. That’s because they are easier to get than many people think, and they do not go away on their own.

Urinary Tract Infections (UTI’s)

The primary function of the bladder is to serve as a reservoir to store urine that is produced when the kidneys filter waste products from the blood. Most UTI’s occur when bacteria enter through the urethra and stick to the bladder wall. And most UTI’s are caused by bacteria from the colon and rectal area. Once there, the bacteria will multiply rapidly.

Women are more prone to UTI’s than men due to their short urethra, a tube from the bladder to the urinary opening of the body. Since it is only about an inch long, there is less of a barrier to the entry of bacteria—so something like sexual activity increases their risk. Menopause also is a risk factor because the reduced level of estrogen allows an overgrowth of bacteria of the urinary opening.

What to do to help prevent a UTI:

• Keep the private area clean and dry. Always wipe yourself from front to back thoroughly, not back to front. If protective pads are used for discharges or leakage, change them and clean yourself often. Moisture between the legs is a breeding ground for bacteria.

• Drink plenty of water all day long—don’t restrict fluid intake. A high daily urine volume will wash out bacteria in the bladder. A low daily urine volume encourages UTI’s by failing to wash out invading bacteria; it also can cause stone formation and dries out the feces. You know if your fluid intake is good if the color of your urine is very light in color.

• Keep a high level of acidity in your bladder reservoir—this will inhibit growth of bacteria. How? Take 500-1000 mg. of vitamin C daily. (Do NOT eat or drink oranges or other citric fruits for this purpose as these actually increase the alkalinity of the bladder!) Many resources will tell you to drink cranberry juice, but I prefer not to drink the extra calories since vitamin C accomplishes the same thing. There is also a cranberry supplement available called TheraCran, but it is pricier than Vitamin C.

• Make sure your bladder is as empty as possible when you urinate. Don’t hold your urine for an extended period of time—when you have to go, go!

So how do you know if you have a UTI? Here are signs, of which some or all can occur:

 cloudy urine
 odor to the urine
 blood in the urine
 burning sensation with or without urinating
 urgency, frequency of urination
 fever

If any of the above signs appear, call your doctor immediately to have your urine checked. An antibiotic is necessary to eliminate the infection and possible further complications. Once there is a UTI, taking vitamin C, cranberry juice or consuming a lot of water will not cure it, and it won’t go away on its own.

Since this is an MS blog article, here is a special note to those with multiple sclerosis: A UTI will definitely affect your other MS symptoms as this is an infection, and if left untreated too long, will cause a flare-up and possible further complications.

Other Bladder Problems

The nerves and muscles work together in perfect coordination to control the storage of urine, signal the brain and void urine. But there are things that affect this perfect coordination, and these symptoms may happen:

• frequent urge to urinate
• frequent urination
• hesitancy in starting urination
• difficulty in keeping the urine flowing, or finish voiding
• incontinence
• nocturia—frequent voiding at night, at times without waking.

There are numerous reasons to cause these symptoms. Women sometimes have bladder issues due to pregnancies. Men may have a prostate issue. Others tend to have problems because of their age. And still others develop problems because of an illness. People with multiple sclerosis commonly have what is called a “neurogenic bladder”, whereby that perfect coordination of nerves and muscles become impaired.

The good news is that most of these types of problems are treatable under the supervision of a good urologist, by medications or other procedures depending upon the issue.
And fortunately we now live in an age when we can talk about bladder problems openly without embarrassment.

Doing nothing and just wearing Depends all the time is not a good strategy. Untreated bladder dysfunction can cause damage to the urinary tract, urinary tract infections, or damage to the kidneys. If you have multiple sclerosis, you need to see a urologist who knows about MS and neurogenic bladders, and begin to learn about bladder management as soon as possible.

Due to my MS, I had all six symptoms listed above with my bladder that started over twenty-five years ago. I found an excellent urologist who put me through several tests to examine and evaluate my bladder (dys)function. This is common practice. Then he taught me what to do using medications and self-catherization, and it changed my social and physical life immensely.

It is a process that takes time and practice but is worth it in the long run. I am really proficient at bladder management and though the damage to my bladder function is severe, I have been able to be like a normal person, and nobody would ever guess that I had problems in this area unless I told them.

I control my bladder now; my bladder doesn’t control my life!

www.DebbieMS.com

Attitude is Everything

“Taking Control of Yourself”

January 23, 2013

I was in the process of writing an article about the ramifications of mental and emotional health when living with a chronic illness like MS, when I came across the following post today while perusing an MS connection online site. It is so incredibly good I am taking the liberty of sharing it to others I know with MS.

“Hi everyone, I have been away from this site for a long time. Just recently got back on. When I first found the site I was looking for help with my MS. Received really good advice then didn’t come back regularly as I should have.

I have learned a lot in the last 7 months. I believe in “pay forward” so I wish to share this with you. I hope it helps and doesn’t insult anyone. The bottom line is I am in control of what I choose to do and not to do, remember this throughout this message.

I have had a multitude of symptoms. Number one is DEPRESSION! I believe this is the cornerstone to a lot of my choosing not to do. I have done mental health therapy with a counselor, PT and OT. Through all of this I became educated. Now I am realizing that I chose to stay in my poor me syndrome. I was so sick of doctor appointments, running constantly which cause me to be exhausted and frustrated because no one could fix me.

I hate the cognitive fog, forgetfulness, physical limitations, sexual dysfunction, tremors, pain, confusion; I hated every part of MS and what it has done to me. I missed the old me and desperately wanted to be fixed without having to work so damn hard to try to get back to the old me. My neurologist told me “change your attitude and you will feel better”. I was pissed off to say the least. It has been 2 months since I have seen him, and I now know he is right. I am in control of my attitude.

My depression was preventing me from living, and I chose to stay this way in misery. We increased my depression meds and I slowly began to change my attitude, which is very challenging with the unpredictability of MS.

I am trying to laugh alot more and trying to adapt to my challenges. Helping myself get enough sleep, drinking fluids, getting educated, another words helping myself. There are days I eat the wrong foods, drink too much caffeine, smoke too much (still working on this need to quit) and those days I know I have myself to thank for how crappy I feel. Exercise is very helpful mentally and physically. I wouldn’t exercise because I couldn’t do what I used to do, so I chose not to do it. This only hurts me more.

So I guess what I want to tell you all, is look deep into yourselves and do a personal inventory. I had to realize I can’t be fixed. No cure for MS. Accept this. Then change your attitude from can’t do to I can do. Find the laughter! As hard as it is to do, acknowledge we are not who we were before MS. We are trapped in this auto immune, unpredictable disease. Say this totally sucks. Then move on. Start over building the new you. Challenge yourself to be the best you can be each moment, acknowledge your success and failure. If you fail, look at the reason why, did you bring this on yourself? Sometimes we cause the situation, other times it’s just the MS. If the latter is the cause, move on; adjust then if you can laugh through it. But you have to move past it.

I type these words and know some of you won’t get it and maybe it will help some of you. I chose not to do a lot; I needed to wallow through the misery of MS. I will have bad days, and if I chose to stay there, this is my choice. I can’t imagine anyone not being depressed with a diagnosis of MS. It’s so devastating. I remember when I was diagnosed I thought “oh thank God I’m not crazy”; there was a reason for what was happening to me. But then I allowed the MS to make me crazy by wanting to be fixed and have all this crap go away. Well it doesn’t and everyday is a new day and full of challenges and ups and downs.

Also, how many times have we heard stress will exacerbate our symptoms, “try to avoid stress”? OMG! Are you kidding me? Ladies and Gents life is not stress free nor is it avoidable. The key to success is how you handle the stress, not how do you avoid it. I mean really you have this incurable disease that has robbed you, this is stressful.

I have a new attitude (most of the time) about stress. It is what it is. I look at stress and think how does this really affect me? I can allow myself to get all wrapped up in the drama, or I can meet it head on, fix it or forget it. If you can end the drama, do it. Set the boundaries. Don’t allow others to suck you into things that really don’t affect you. Shelter yourselves from the unnecessary drama. This only zaps your energy and well being. You need to protect yourself. Stress is like infectious bacteria that want to invade you and make you sick.

Set boundaries, make them know and put up your shield. Some people may think you are being mean or uncaring. So be it. I know what I need to do to keep myself upright and moving forward. If they can’t accept this, then I guess they are not ready to accept me for who I have to be. I can help them but only if they don’t suck me into the stress and drama.

You need to see things in black and white at first, don’t allow a gray area. As I learn more about me and what I can tolerate, I may be able to not have such a strong force field around me. But for now this is what I need to do for me. This saves my energy for the moments I have to really deal with big stressors that take me by surprise. Then when I have those stressful times, I can take a realistic approach to how to not allow it to make me sick. I can think clearer and reset the boundaries for each “big” stressful situation. May the force be with you all!

I hope this rambling helps most who read it. Some of you may think I am nuts (sometimes I am but my counselor assures me I am not crazy). The bottom line is take care of yourself first, everyone else comes after you. You need to find your “new” self and set realistic goal and boundaries and make them known. Say them out loud for loved ones to hear and understand. Ask for help, but don’t ask everyone to do everything for you. Rise to the challenge and find the “new you”. I never thought I would say this, but MS has helped me to see how the old me really wasn’t all that healthy mentally or physically. The new me will be a new and improved, just slower but I have a better outlook today than yesterday and for that I am grateful.

Best wishes to you all! Your friend in MS, Michele”

No Michele—you are not rambling and you are not nuts. You are an incredible inspiration. There is a sign in my doctor’s office that reads “Attitude is everything—Pick a good one!” I love yours and the next time I get down in the dumps and have trouble getting out of it, I will read your post. I give it a AAA+ grade, for An Awesome Attitude.

There is no mystery that people with positive attitudes are happier, live longer, and are stronger.

Thank you.

www.DebbieMS.com

Fatigue & MS

“What it is—What to do”

“People look at me and just cannot understand why I get so tired.” (MSer comment, March 2011) This is a quotation I used in a chapter about fatigue in my book, Managing MS: Straight Talk….”

During a brief conversation with my sister last night, she remarked that she had no energy, she couldn’t think clearly, and all she wanted to do was lie down because she felt so exhausted. She has a virus. I got it—I knew exactly how she felt.

I often describe MS fatigue to people that it is like having a cold or virus—that you feel so exhausted all you want to do is lie down. Out of all the symptoms I and others have experienced with MS over all these years, I truly believe this is the one symptom that is the most difficult one for everyone involved to understand and know what to do about it.

But fatigue is extremely difficult for a non-MSer to understand because you can’t always see it—there is no stuffed up nose, swollen eyes, or sneezing. Or, someone may say “you look tired, maybe you should take a nap.” Okay, a nap may help, but fatigue isn’t only due to being sleepy.

It doesn’t matter if the MS case is mild or advanced. It doesn’t matter if one had a good night sleep or if the MS is not currently active. Fatigue is almost always present with MS, 24/7. Why? Fatigue exists because it is caused by MS–a disease, a chronic illness–and it causes other symptoms such is walking problems to intensify.

Fatigue is the hallmark symptom of MS. It is a universal complaint by 80–90% of MS patients. And it is finally being recognized as a serious obstacle for employment by the Social Security Administration when applying for disability benefits.

• A MSer will get fatigued easily, whether other symptoms are present or not. Simple activities like making dinner or talking on the phone too long can be exhausting. The slightest thing can make it worse, such as not eating, drinking enough fluids, or being overheated.

• Fatigue is compounding and escalates quickly if MS becomes active due to a relapse, or the amount of disability has increased over time. For example, sleep disturbances due to bladder problems at night, or extra effort required to walk because of spasticity or other gait problems, will impact fatigue significantly. Energy is reduced, weakness increases. This causes stress, frustration, and depression that will then lead to even greater fatigue.

• Fatigue is often caused by medications taken for other MS symptoms.

Often we can combat fatigue by pacing our activities, taking frequent rests, or letting others do things for us. Yesterday I came across an article entitled What You Can Do About Fatigue From MS, and is worth a read. It is from a blog I subscribe to called Stu’s Views & M.S. News; the source of this article was WebMD. Here’s the link http://bit.ly/Wrk8M9 .

There ARE many ways we can help to manage fatigue, and even if some do not work, other things may. At least we can try and keep on hoping.

www.DebbieMS.com
Author/MS Counselor/Living with MS

Managing MS: Straight Talk…

“Why Read This Book?”

There are many books about multiple sclerosis. If you want or need to read something about this neurological disorder, I’m going to explain why Managing MS: Straight Talk From a 31-Year Survivor is THE book you should read.

I will give you my pitch that my book is unique because of its presentation, content, creditability and tone:

• MS is complicated to understand. I make it easy to understand using a “what to know—what to do” format for a wide array of subjects like symptoms, treatments, interpersonal relationships…

• It’s short, inspiring, and interesting. People who have read it so far are amazed at what they learned in the short span of only several hours it takes it read. Wonderful reviews have been received from a wide range of readers.

• People are afraid of MS. Even the sound of “multiple sclerosis” is chilling. A main objective when I wrote the book was to help reduce the fear of living with MS, no matter if you have it or not. I felt it crucial to use a tone, words and expressions that would enable the reader to feel comfortable. I clear up misconceptions about this disorder.

Managing MS is accurate. Information and resources contained within have been endorsed by a variety of health care professionals, including one of the best neurologists (MS Specialist) in Phoenix, AZ.

• I am a peer. I lived the major part of my adult life with MS and survived it. This book is not a story about me, although I do share personal experiences to explain things. It is a guidebook incorporating my experiences with thousands of people I interacted with over 25 years. I have been and continue to be a volunteer, educator, counselor, and researcher in the MS community.

• It’s affordable/ available in all formats. Even if you pick up a few tips, it’s worth it.

• There is information that is useful to those living with other chronic diseases, such as how to handle fatigue, doctors, or interpersonal relationships.

I invite you to visit my website www.DebbieMS.com  that gives much information about me, my credentials and Managing MS: Straight Talk From a 31-Year Survivor. It also includes self-help videos, weekly articles I write, other activities I engage in to help persons dealing with MS, and an email address where questions can be submitted to me. Here are some quick links within my site:

• A profile The National Multiple Sclerosis Society posted on their website this summer. http://nationalmssociety.org/online-community/personal-stories/debbie-petrina/index.aspx

• A book trailer I recently created myself http://www.youtube.com/watch?v=4X0YErTxXbM&feature=youtu.be

• Orange Awareness Campaign for MS I created and launched (this is fun!) http://www.youtube.com/watch?v=JtMjKXP4dQU&feature=plcp

• A “Meet-the-Author” video at the bottom of the Home page on my website that discusses many aspects of MS, not just the book.  Great for “newbies.” www.DebbieMS.com

I want to emphasize that this book is about managing MS. There are many things a MSer can do to manage and control (yes, control!) both the symptoms and the course of their disease, both with and without medications. But this all takes knowledge, support, work, dedication and discipline. There is no magic pill or injection that will manage, fix or control MS. Not yet.

So if you are looking for a book about multiple sclerosis that is an autobiography, full of specific medical terminology, or containing the latest breakthrough drug or study, this is not that type of book.

www.DebbieMS.com
Author/MS Counselor/Living with MS

Giving Thanks to What Really Matters

“Positive Perspective & Attitude”

November 19, 2012

Recently an MS friend of mine and I were having a chat, and we were talking about how MS has impacted our abilities over the years.   Ah, the value of a peer to share with…

Being an optimist, I said there is a silver lining in everything.  If it wasn’t for me having MS, I would have never met the truly wonderful friends I have today or the beautiful people I met during the major part of my life.  Good friends are priceless, and I am so grateful to have them.

I would never have met them if I didn’t engage myself in the world of being a volunteer.  Volunteers are special people.  They give of themselves and ask for nothing in return.  They are there when you need them, smiling.  That is priceless, and there ARE free things in life.  I would never have survived MS because of their support, and will be ever grateful to them.

Sure, I have my boatload of problems due to the MS.  Just like others who have problems with cancer, special needs children, loss of limbs because of a war… Life is not equal for everyone, and things surly can be a lot worse.  I’ve lived through many major-life crises not related to MS—deaths, job losses, melanoma—but I always came through them.  I give myself time to grieve, vent and complain; then establish my priorities and focus on what really matters.

Sometimes I make a list of what I have to be thankful for, and it is very long.

Things like these keep me optimistic and having a good attitude.  Without a good attitude and a positive perspective, I would have shriveled up long ago; like a flower that would die without sun and water.

So before this Thursday, make that list, and thank everyone that has helped you in some way.  It will make you feel good.

Happy Thanksgiving!

www.DebbieMS.com

 

 

 

The Sensitivity of MS Symptoms

“It’s only a Pay Day”

November 5, 2012

Two days ago I participated in two events that lasted all day with only a two-hour break between them. I normally only plan one outing per day, but both events were very important to me and just happened to fall on the same date.

When I planned for the events, I knew I would be fatigued and my MS symptoms would be whacked out afterward. So I made sure I got a good night sleep the night before, planned to lie down for an hour between events, then do absolutely nothing else the rest of that day when I returned home.

The fun and adrenaline enabled me to sail though the day. And sure enough, I returned home exhausted but fulfilled. The mental and emotional satisfaction was worth the physical stress I endured. After some Chinese take-out, I went to bed.

Yesterday, after nine hours of sleep, I woke up still feeling wiped out. It felt like I had a virus. My muscles ached all over, I felt nauseated and dizzy, and all I wanted to do was lie down. Not only did I have overwhelming fatigue, but many of the symptoms I handle with my own case of multiple sclerosis were intensified. The spasticity flared to the point that my legs were “frozen” straight, the pain in my back was unbearable, and the bladder medication wasn’t working. My mental faculties were off– I couldn’t concentrate and I kept forgetting things. Both hands were exceptionally tingly and weak.

It was a “pay day”.

I knew from experience not to freak out. A couple of days of mostly rest and minimal activity would calm the symptoms; I would revert back to my “normal” state. It was just a temporary worsening of symptoms triggered from the excess stress. And I also knew from experience that I didn’t do any permanent damage to my nervous system.

Neurologists like to use a fancy term for this, and call it a pseudo-exacerbation. I don’t like that term because to me it is misleading, implying an actual flare-up or attack. But it’s not! I was “paying” for overdoing it on the previous day, which is why I call it a “pay day”.

It’s like a hangover after a night of too much wine! Rest up, drink plenty of water and eat well. All will pass. Once in a while it’s okay to do this; but if you over indulge everyday then it become a chronic problem.

Any stress can intensify symptoms, as well as other things such as heat, hormones, or even forgetting to eat. I know from experience what causes my symptoms to temporarily worsen, and I know how to manage to call them down.

Aggravating and annoying? Yes. Cause for worry or calling the doctor? No.

I’m still extra fatigued and not quite my “normal” self after that long day I had. But it was worth over indulging and I will do it again.

www.DebbieMS.com

MS and Sleep

“A Top Priority”

If someone asked me what is the #1 thing a person with MS should do, I would say make sure you sleep. If you do nothing else for yourself every day, you should at least make sure you get 7-9 hours of good sleep.

What is good sleep? Being able to fall asleep and stay asleep. Easier said than done for a person with MS, whose sleep becomes dysfunctional due to bladder problems, pain, spasticity, worries about life problems, and the actual effect on the brain by MS itself.

Why is sleep so important?

Sleep affects EVERYTHING in the body—your heart, energy level, pain, weight, and even skin. Your brain cannot function well without it. It affects your mental state: judgment, reaction times, moods, memory, concentration and decision making. Sleep enables your brain to process information and store it in your memory; it rejuvenates parts of your brain that was used during the day and even parts that are not normally used.

Sleeps keeps your immune system healthy and your resistance up to prevent colds, viruses and illnesses. Sleep problems can lead to accidents, as balance and coordination issues that many people with MS suffer with become worse. Sleep deprivation makes it harder to deal with stress, solve problems, or recover from sickness or injury.

Good sleep relaxes the body, helping to reduce pain from sore and tense muscles.
And poor sleep or lack of sleep can impact your life at home and at work, as well as your relationships. Energy levels—already plagued because of the fatigue factor—are exponentially reduced for a person living with MS.

It’s common sense. But what’s not apparent to many people is that sleep also gives your vision a rest. Vision is a cognitive activity! Poor sleep means your neurotransmitters, which normally suppress pain, don’t have time to refresh. Not getting enough sleep can impact the arteries, increasing the risk for heart disease/stroke and causing skin to become stretched and shallow.

Less sleep affects the appetite since it causes one to snack more, increasing the risk for weight gain. Becoming overweight makes physical activity more difficult and lessens endurance, which means fewer calories burned. In addition, inadequate sleep releases less serotonin in your brain that can cause the body to crave sugary foods.

There are several things you can do to improve the quality of your sleep. (Note: This list was from an article in Make the Connection, U.S. Department of Veteran Affairs.)

• Keep your bedroom quiet, dark, and cool
• Make your bedroom a place just for sleeping and not a place for other    activities like watching television, reading, working on the computer, or listening to the radio
• Create a relaxing bedtime routine
• Stick to a sleep schedule, making sure you wake up close to the same time every day
• Get outside and exercise daily (but not close to bedtime)
• Take medications that might delay or disrupt your sleep earlier in the day
• Avoid caffeine and nicotine
• Avoid alcohol before bed or drinking excessive amounts of alcohol
• Avoid large meals and beverages late at night

For MSers whose sleep is bothered by their symptoms, I offer these suggestions:

• Manage your symptoms that impact your sleep by minimizing them as much as possible. For example, I suffer from spasticity, and I make sure I stretch my muscles every day. This reduces the tightness, jerks, pain that spasticity causes. I have much back pain, and deep breathing and a shot or two of scotch will put me to sleep right away. I refrain from liquids two hours before bedtime to get my bladder as empty as possible. I take my antidepressant at night, since a side effect it causes for me is drowsiness. If I wake up in the middle of the night worrying about something, I read a magazine article to get my mind on something else.

• Consider a prescription for sleeping pills. Personally, I have had a ‘script for them for thirty years. My personal rule of thumb is that if I have two nights of poor sleep in a row, I take a pill on the third night. I make myself sleep, because I believe that not getting good sleep is far more harmful for me than a sleeping pill.

So, bottom line, make sleep a priority. A requirement. You’ll feel better, think better and function better.
www.DebbieMS.com

Managing MS vs. Living with MS

“Are they the same thing?

October 1, 2012

Is there a difference between Managing MS versus Living with MS? Yes and no. It depends on who you ask.

On September 24, The NPR Diane Rehm Show aired “Diagnosing, Treating and Living with MS. A panel of experts—neurologists/MS Specialists including a doctor who has MS—answered audience questions about diagnosing, treating and living with multiple sclerosis.

My first response after listening to the show was that the doctors in the discussion did not truly address “living with MS.” The responses were dominated by treatments and medications that patients should take. Questions that were asked about symptoms like spasticity and fatigue or lifestyle activities like diet, stress and exercise were glossed over with comments like “research hasn’t yet shown…” or reverted back to the necessity of getting on a treatment ASAP.

I have had MS for 32 years, and while I think the treatments available and new ones on the horizon are exciting, I would like to point out that there are so many effective ways to manage MS daily that should be understood that are non-medicinal.

Management of MS should be a two-pronged approach: medicinal AND non-medicinal. A person should not only rely or be concerned about drugs to solve their problems with MS. It’s not enough to just “live with it” and think that having an injection or popping a pill will magically take away or minimize the problems MS burdens a person with.

There are numerous things an MSer can do to manage and control (yes, control!) both the symptoms and the course of their disease without the drugs. But this all takes knowledge, support, work, dedication and discipline. There’s no easy way out of it, but trust me, it works!

First, a healthy lifestyle should be maintained to prevent illness, stress, etc. that can help minimize further relapses/damage to the CNS. This means keeping your resistance up and body healthy through proper exercise, diet, stress management, sleep/rest etc. Illness/infections often trigger a relapse by activating an immune system response with subsequent damage to the CNS. Extra precautions to prevent accidents/falls (like using disability aids) would help accomplish the same thing.

Second, there are many things a person can do to manage symptoms. For example, I suffer with much spasticity; by doing daily stretching/exercising, while taking baclofen (a medication to reduce spasticity), the stiffness and tightness is greatly reduced for me. Another example is the importance of learning good bladder management from a neuro-urologist. Eighty percent of persons with MS will suffer from a bladder issue at some point. Putting up with a leaky bladder by wearing pads is not only distressing, it is dangerous. Urinary tract infections (UTI’s) are common and can lead to complications and undesirable consequences.

Understanding the sensitivity of MS to so many factors that intensify symptoms can enable a MSer to take certain actions to calm their symptoms. A prime example is the negative effect that heat has on symptoms like fatigue, endurance, balance… One can learn easy ways to counteract it quickly by using a cooling vest, ice packs, drinking ice water and taking a cold shower. Fatigue—the hallmark symptom of MS that affects 90% of MSers—is another symptom that can often be managed by frequent resting, lifestyle changes, support from others…

Alternatives therapies have helped physical, emotional, and mental issues for many, many folks with MS. These things include yoga, trigger-point therapy, pilates, deep breathing, tai chi, reflexology to name some of them. Finding things to make a person feel better goes a lo-o-o-o-ong way. Some things work for some better than for others, but how do you know if you don’t try them?

After the Diane Rehm show was over, the doctors continued to answer questions submitted by people. Dr. William Shaffer, an attending neurologist who also has lived with MS since 2002 had this to say in response to a couple of off-the-air questions:

“The disease modifying medications do not directly help with symptoms in MS. At the same time, if the disease is being modified with a proper medication, sometimes people do feel better with their symptoms. However, there are many medications/management for the many symptoms we as people with MS can experience.”

“I don’t know any specific numbers on people who didn’t take medications and how they are doing. If you look at it like this, these medications are to delay disability, slow progression and some can have improvements on MRIs. I can tell you that I have seen people in my clinic that had been doing well for years and so didn’t start any medications. But, then they had an attack that hit them quite hard. Then they wanted to go on a medication, “to get better.” I told them that the medications are to keep from getting worse and not to make one better.”

Finally, one of the doctors had this remark: “We encourage patients to really think about lifestyle issues, to maximize their activity and exercise, and also to maximize healthy diet, because we now know those things do impact the amount of residual disability people have.”

I wish that comment had been made and talked about during the show.

So if you asked me if there is a difference between managing MS and living with MS, I would respond “yes!” Managing MS should be an integral part of living with MS. I know many people who have had MS for 20-30+ years and I know they would respond to this question the same way.

But the opinion of the person with MS is what ultimately matters. Do you want to just live with MS, or do you want to take some control and manage your MS while living with it?

The choice is yours!

For more info about me and what I am talking about, please go to www.DebbieMS.com

Managing Overwhelming Circumstances

“Speak Up, Nicely.”

August 13, 2012

It was 117 degrees yesterday, and the weather prediction doesn’t expect the temperature to go down much over the next week. My family from out-of-state is staying with us for the next ten days. Between the heat, fatigue and overwhelming activities under my roof, will I manage? Yes.

How? I learned when to say “yes”, “no”, and “would you please…”

This wasn’t something that came easy to me when I was diagnosed with MS. I was always a very independent person, offering my help to others. It took a long time to use these words in the right manner and circumstance. After all, we are talking about a change in behavior. Changes in behavior do not happen overnight, but it can happen if you want them to.

For me, it wasn’t a conscientious decision on my part to ask for help, accept help, or set limitations. The mounting of excessive fatigue and other interfering symptoms forced me. If I didn’t succumb to changing my behavior in this way, I would not have survived my MS.

Not only is it essential to me, it’s essential for my friends and family, too. In the beginning, they wanted to help, but were cautious about what to do. So I learned to open my mouth in the correct way. I set the tone: if I am comfortable, they are comfortable. If I tell them what I need (or don’t need), or what to do (or not do), they are glad for it. Everyone benefits.

It was difficult in the beginning for me to say “yes”, “no”, or “would you please…” But once I got started, it got easier.

Here are examples of this week so far:

“OK. You know the rules. Mi casa es su casa. Help yourself to anything you want and clean up after yourself.”

“Would you excuse me, please? I am so tired and need to lie down for awhile.”

“Yes, you can help—could you finish cutting up these veggies? And can someone else take out the garbage?”

“It is SO hot. Would you please get me an ice pack from the freezer—there’s a crowd in the kitchen!”

“Would anyone mind going to the store? We need to get…”

“No. As much as I would like to go, I better not. It’s too hot and I’m too tired. When you are gone, it will give me a great opportunity to sneak into bed and take a nap.”

“Yes, you can run the vacuum for me!”

“No, you guys go ahead and watch the movie—I’ll watch it another time. I’m going to hit the sack early.”

It works beautifully. My family is great–willing to pitch in, and understanding my need to take care of myself. They love to help me, and I love their help and appreciate their understanding.

Gone are the days when I felt that I needed to get up first in the morning to make coffee. Gone are the days when they felt uncomfortable as they watched me struggle trying to fix a meal for them. Gone are they days I felt too proud to ask for help. Gone are the days when they felt intimidated to offer help.

So, do yourself and everyone else a favor: Speak up, nicely. It is a win-win situation.

www.DebbieMS.com

MS Treatments

“What to Take–What to Do?”

August 6, 2012

There is no cure for MS. But there are options available to treat the symptoms, relapses and the course of the disease.

To keep things simplified, there are three groups of treatments, all with a different purpose: Medications, Corticosteroids, and Disease Modifying Agents.

Medications

These are used to treat the symptoms of MS, and the use can be short or long term. They minimize the intensity or effect of symptoms so the quality of life and daily function is more manageable. Examples include antidepressants for depression, baclofen for spasticity, Ditropan for incontinence and so forth.

Corticosteroids

Corticosteroids (“steroids”)—usually Solu-Medrol and prednisone– are used to reduce the duration and severity of a flare-up (or exacerbation, or attack). The administration of these drugs is high dosage over a short term (3 days to several weeks).

Disease-Modifying Agents (DMA’s)

Disease-modifying agents (also known as DMD’s—disease-modifying drugs) reduce the progression and activity of the disease. The FDA has approved ten of them now, and much research is occurring to continue to find more. Most of them are for folks who have the relapsing-remitting form of MS, or for those who have secondary progressive disease who continue to have relapses. They are given regularly mostly by injection over the long-term.

Most people with MS have used drugs in at least two of these categories. Some work for some people and some don’t work at all for others. If a drug is tried and doesn’t work, then something else can be tried. Every persons responds to drugs differently.

Medications and Corticosteroids have been tried and used for decades. Disease-Modifying Agents started becoming available in the nineties. Today, as I participate in online discussions and forms, it seems that almost everyone with MS is on one of these. Patients are strongly advised to get on one as soon as possible by neurologists, and the MS Society.

But taking DMA’s is a difficult regime. There are side effects, require much monitoring (doctor visits, MRI’s, clinic visits…), and they are expensive. While some folks get financial assistance through the drug companies, being a clinical trial participant, etc. many others pay thousands of dollars annually out-of-pocket.

And then the recent news comes on July 17th that a “Study Suggests That Interferons Did Not Reduce MS Progression”.

WOW! Can this be true? After all those years of injections, tests, office visits, side effects, dollars spent…. Now what? And what should a newly-diagnosed person do now about starting interferons?

I have had MS for 32 years and never took a DMA for various reasons. That is my personal decision. Throughout the years I have taken medications and steroids to help me with both symptoms and relapses. However, I would never tell any one not to take them. That is their personal decision.

So, what should one do about the recent news about interferons?

Whenever I have considered any medication over the years I followed these steps and offer them to you for your own consideration:

1.) Make sure you research the studies thoroughly about a drug before going on one. Do it from a variety of sources. Carefully evaluate the studies behind the drug—number of people involved, length of the study, type of study, etc.

2.) If you are on a drug, are the benefits outweighing the risks?

3.) There is no magic pill or injection to make MS go away. There are many other things someone can do to manage MS effectively to complement any drugs you are taking. This includes health and wellness (exercise, sleep, stress management…) and alternative therapies (massage, yoga, pilates…)

4.) Doctors aren’t always right. Persons with MS know their bodies best and should have the final say.

Take your time with making a decision. A delay of several weeks or months will make little difference in the overall course of your MS.

It’s common sense, your body and your decision.

www.DebbieMS.com